So if you read my last post about Gannon, you know we went down the the University of Iowa yesterday. This post won’t make much sense unless you read that one so check it out here:
We left about 6:40 am for a 9:00 appointment. First was our appointment with the urologist.
I brought up all of my concerns, why I thought he might have prune belly, we talked for a long time. He had a resident with him and she was very attentive as well.
The main lobby of the children’s hospital – pictures don’t do it justice!
There are several yellow flags that aren’t enough of a problem to hand out a diagnosis of prune belly. The number one reason his because his kidneys appear normal on imaging. Yes his bladder is consistently large. He does seem to have some sort of abnormal ab muscles and his testicles have not descended. But none of these symptoms are enough to cause a diagnosis. He went through each set of imaging with me and explained why he thought this was gastrointestinal tract related. This was helpful. He said maybe it could be a “variant” of prune belly but to use that as a last resort diagnosis AFTER he sees GI. We will set up a surgery with them in the next few months.
On to GI. Our main concern with GI is that Gannon cries when he poops and why does his belly look like that?
The Pediatric Specialties Clinic – this whole hospital is so well decorated and shiny and new ??
GI thinks it still could be prune belly because if it is a variant their kidneys can appear normal but the distended bladder would be enough for a diagnosis.
GI ordered a “lower GI series” which consisted of Gannon being strapped down, a catheter inserted into his rectum and fed through the large bowel while administering contrast. Lots of contrast.
They had to strap Gannon down with his arms above his head to get the imaging they needed. He didn’t like that much but it had to be done. Motherhood is not for the faint of heart!
The staff were amazing. They did such a good job of explaining and taking care of Gannon. It was hard to watch but they made it okay.
We went to lunch after that while we were waiting for the images to result. Isn’t this a beautiful hospital?
In the meantime Gannon was…expelling the contrast in large quantity. I went to change his diaper, he started crying/pushing and PROJECTILE poopy contrast all over me and the bathroom, my pants, shirt, shoes, the floor, the changing table – everywhere.
The poop-explosion that I wore for the rest of the day! Not to mention my pants or shoes!
I stood there in shock for a good 3 minutes trying to figure out what to do. I wiped off as best as I could – I used all my wipes and I asked the receptionist to put the bathroom out of order until housekeeping could come ?♀️?♀️
Anyway, here’s what the lower GI study showed:
Gannon’s anatomy of his large bowel is abnormal. There’s lots of extra bowel, they call that “redundant.” Instead of the colon going to the left it goes to the right. He had monstrous amounts of stool his his colon despite being regular. His anus also appears abnormal. Possible prune belly. Possible Herschsprungs. Possible Chronic pseudo obstruction. Possible anus imperfecta. At this point anything is possible.
The contrast lights up the path of his large images tone
They consulted surgery who wants us to come back on Tuesday after the surgeon review his case. Likely whatever Gannon has needs to be fixed or diagnosed with surgery. So that will be 3:20 pm on Tuesday next week.
They listened to me. They believed me. The validated my concerns. They took action. They got other departments involved. This is not sad news – this is wonderful. To hope they would tell us “he’s just fine” is not what we want right now. We know there is something wrong and we want answers which I think we will get much closer on Tuesday.
Thanks to all who have reached out. I’ll let you know what I know when I know it.
Blessings to all of you. He is such a precious one. Good luck with the next visit. P.S. Pack a change of clothes for yourself. I know you do for Gannon. Hugs.
Love and hugs!
He looks exhausted but by the look of you and your attire, you must be beyond that. Will be keeping you in my thoughts and prayers.
It does sound like good news though that you are closer to a diagnosis and that the waiting time will soon be over. Thanks for keeping us posted.
Love and prayers
Being a mom is some times tough but hang in there. Just love on Gannon and take a big breath that you will have answers. Love and prayers.
You’re a brave mommy! Keep the Faith! God is here for you.
I understand what you mean when you say you didn’t want to be told that Gannon is fine. I’m glad you were heard and are starting to make your way to getting some answers. Thank you for sharing here. Like your mom’s blog, I know that you will be helping someone out there who may be in a similar situation. I will continue my prayers.
Praying for you all…
I’m so happy they found d something wrong! I have heard, “it’s all in your head* for far too many years until ONE doctor finds ally decided to do exploratory surgery and found massive adhesions that were strangling my intestines. Prayers for Tuesday and more “good” news.
Fantastic news! It’s amazing and frightening that you’ve had to push so hard for this. You are terrific!
Praying for you and your family. That Young Gannon has a real problem is not great news. Having someone believe you and start doing something about it is a real answer to prayer. Keep trusting Out Great Lord Jesus to work out the problems. Surgery and all.
What wonderful news! So glad you’ve finally found help! Hugs and prayers continue!!
Not knowing was always the hardest for me as a mother to four sons. All of you will maybe breathe easier after this next round. We’re all cheering you on.
The University of Iowa children’s hospital has always taken great care of Isaiah. You are in good hands!
I’m so happy that you kept going! No one knows their baby better than mom!! Sending hugs and prayers as you continue on your journey. Gannon is very lucky to have you for his mommy!!
It’s so hard to watch your baby when things aren’t ‘right’. We saw this with our granddaughter and the medical specialists are such a blessing. Prayers for answers and treatment success .
So glad that Gannon’s problems are fixable! This hospital sounds wonderful. So glad you are keeping updated. More prayers coming your way.
I am so happy to hear the doctors are listening and reacting to what YOU tell them. That is important as you know the history and are there day in and day out and know your child. Sending well wishes that they are able to determine what is happening and find a solution to resolve it. Big hugs to all of you. You are doing great Mom and Dad – advocating for your baby.
I’m so glad that you were able to have your concerns addressed and that there is a plan coming together. Keeping you all in my prayers.
I am crying for you/with you. Tears of joy. Tears of pain. What a time you had…and you handled it like such a good MOM!! Thank God they are listening to you and validating your concerns. On to a diagnosis and the beginning of healing. Amen.
-Jean ❤
What a relief to have all this action — to be listened to, sent here and there to the right places! HUGE! And you only have to wait until Tuesday to continue the process! It’s so great to be getting help instead of “not my department” and “we’ll keep an eye on it.”
Thank goodness someone is finally listening to you! More doctors need to listen to the mamas. I am a retired nurse that spent a lot of time working with babies and children. I also had a child that had a lot of health problems. It can be so frustrating for the families when they don’t listen to them. Prayers for your little trooper!
Ohhh…take care.
So good to read especially that moms do know best & you were recognized & not just pushed aside, again! Finally offering you help with Gannon & perhaps a diagnosis soon! Keeping your family in my prayers & sending hugs to all of you!
Take extra clothes. Prayers …
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Definitely learned my lesson!!
Gannon is lucky to have a mom who is also a nurse. Momma always knows best. Glad they aren’t just ignoring you and actually figuring things out.
Having gone through a kind of hell with my son years ago, I can relate so much to what you are going through. I wish you and your family energy, faith and continued strength and support in the future. Your family has had more than its share of stressful situations. Take care of yourself.
Filled your mom for years. Been praying for Gannon and will continue to do so. Glad you’re a nurse. Maybe the doctors listen better to you.
Sounds like you finally have the right team on board! Really disappointing to hear how the Mayo dealt with his issues. So often the Mayo is touted as the be-all, end-all of medical care.
You stick to your guns, Mama! We know our babes best and are their best advocate!
Keeping baby Gannon and all of your family in my prayers!
I can relate on many levels. First, just to share that I also have redundant colon and I can tell you for sure that bowel movements are often accompanied by cramping and pain. That might explain why Gannon cries with passing stool. Sometimes I want to cry too! I take a medication to keep me from getting bound up. If I am not diligent, I can go 2 or 3 weeks without a BM due to things backing up in all that colon twisting and turning.
The fact that his stools are soft is good. From my own experience I would suspect that the stools he passes are just what is being pushed out by the colon being full, rather than peristalsis moving it along. I have very lethargic motility which adds to the problems.
I hope you are very close to having answers to Gannon’s health issues, and am holding you all close in my heart as you travel this path. Hugs and love!
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Thank you so much for sharing!
Were you ever a candidate for a surgical repair?
We see the surgeon tomorrow!
I know from experience the frustration with not being taken seriously by doctors. Please know that you, Gannon and all your family have been and will continue to be in my prayers.
Bless all of you in this journey! Happy
I am so proud of you! Your momma gut knows when something is not right. Keep fighting for him. Don’t take no for an answer. Just like you did on this visit. You have been validated!! So hope he gets better soon. He is so darn cute! Prayers sent to you.
Very formative… thank you for keeping us well informed. Keeping you and sweet baby Gannon in prayer.
Oh my. Such a beautiful boy! Sending prayers.
Sometimes there is just no replacement for the specialists at a children’s hospital for little ones. Sending prayers for more clarity, continued wise and kind care providers and a path forward. Strength to you all.
So glad you are on the path to finding out what is causing Gannon’s health issues. Will be sending prayers for all of you.
So glad they listened and didn’t simply say everything is fine. I hope they find concrete answers and can fix whatever it is.
So glad someone finally listened to you!!! Besides being a nurse, you are a mother and your intuition that there was a problem should have been taken into account. After you get everything sorted out, I would be taking a copy of what these doctors found and how they fixed it would be headed to the two different hospitals/doctors to show they where they really messed up!!! If you know what you are dealing with, it is so much easier on you. Praying they will be able to fix all of Gannon’s problems with one surgery!! BTW, that was one heck of an explosion in the bathroom!!!
I’m so glad that you got someone to listen to you. Gannon and his family will be in my thoughts and prayers. Thanks for sharing.
What great news, not that something is wrong but they have determined there is something wrong. Now they will figure it out and fix it. You knew it wasn’t normal and you kelp pushing to find out what it is. Great mom, you and every mom should know when something is wrong and don’t stop till you find out what it is.
Prayers for Gannon everyday ????????.
This is the time when he is young to have this done,
God will bless him and he will come thru with flying colors.
So glad to hear some news! You are all in my thoughts & prayers!
It is wonderful that you are the mother who kept pressing for him. Hoping they can fix it.
you are an amazing mother and advocate for your child. you are getting closer to a dx and POC. Until next week……
I am praying for Gannon…..I so hope that you get answers on Tuesday and that surgery can help him…..wonderful things can be done and I am pulling for you
Oh the poor little guy — prayers sent to him and your family that this can be fixed without any
problems. Hugs and prayers
So happy they listened to you. Hopefully you are on the correct path! Many hugs being sent your way.
Praise be someone listened and is formulating a plan. Will be praying for all of you and his team of doctors.
So glad they listened and that you may be closer to getting some answers. Gannon looks all wore out, so glad he did well.
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He was POOPED by the end of the day (no pun intended) Nice to hear from you again Kim! You’re always supporting whatever trend I jump on! 🙂 THANKS!
So glad you trusted your “mum instincts” and have finally been listened to! We know our children! Sending love & hugs to you all xx